Time for an Update - Herx & EBV

I'm sat here watching The Great British Bake Off, my ultimate comfort TV programme, & I'm trying to think of something to write about. Then I remembered that my last couple of posts on here all the way back in May & were updating you on all the Herxes I was experiencing thanks to being overloaded with an Homoeopathic medication used to kill off the Epstein Barr Virus.

This made me think that maybe instead of trying to write some random post, I'd let you all know {if you're interested} how the past couple of months of recovery have been going. If you need a reminder of my previous posts, you can read them here: What The Herx 13th April -17th May & Fight Until You Can't - Herx/EBV Update

The Monday after I wrote my last update, I had to Doctor called out to me. This was mainly to put my mind & my mum's mind at ease that the EBV hadn't caused a stroke, since I was struggling to speak so much. After being checked, to my utter relief, he cleared me for Stroke but being the thorough Doctor he is, he wanted me to has a load of blood tests done to make sure the EBV hadn't caused any damage to my organs.

A nurse came a couple of days later to do the blood draw, she was absolutely lovely & when she liked my Cookie Monster pyjama bottoms & that she didn't like having her bloods done either, I knew she was going to be great at it. It's always been my experience that the Nurses that don't like having it done, will always take extra care when taking someone elses. I had the results back by the end of the week & everything was clear - another massive relief!

It took the rest of that week for my handwriting to be just about back to normal, though I still found I really had to concentrate when writing each letter, this improved after another week of perseverance. As I mentioned {I think} in my last posts, my energy levels were rock bottom & showed no improvement for a good month. I was back to being fully bed bound again after about a year & to help preserve energy when I needed to move, I was using my crutches. It took a little while but as I began to feel less shaky on my legs, the less I used them, as I knew I needed to begin to build up my strength again before even attempting to get down the stairs.

Photo Found via Instagram

Once I began to feel a bit more myself, the first activity I attempted was a shower. It left me utterly wiped out but was proud of surviving it. As the weeks on, I was able to add an extra shower in every few days, while each one was exhausting, I knew I needed to keep going with them as these small steps to help me recover & at least get me back to my previous baseline.

Little by little I'm coping with more activity, going from one shower wiping me out a couple months ago, to 15 minutes in the garden causing a weeks worth of PEM a month ago, to a couple of weeks ago managing an outing in the car & a tiny wander round a shop, which of cause wiped me out for a good number of days, but I am so very proud of the progress I'm making & so incredibly proud of my body. It just keeps on fighting with me & copes overall really well with all I'm asking of it.

Okay, after that positive stuff, time for some not so positive; My speech is still pretty messed up! Although the stuttering I'm doing is lessening, I've not had a day yet when I haven't stuttered. I've also noticed that when my exhaustion is at higher levels than my normal, the stuttering worsens. In the past, at that point I would slur, but never stutter. I know these things can take time & I'm going to give it another couple of months to see if there's anymore improvement. If not I think I'll be heading to the Doctors to see what can be done, as for all I know, the EBV could have caused damage to my brain, which wouldn't show in any blood test. I know people live with stutters everyday & I could have speech therapy, but I can't help but be frustrated by it, by the fact that the medication I was told would help me has caused this. To be honest completely frustrated by the entire situation & I'm mad at myself for even trying it; but when you've got an incurable illness, you'll try anything to feel even just a little bit better!

I'm still not having any Bioresonance or supplements, other than B12 which I started back on Monday, which after my mum again spoke to the person who deals with the EBV, is a good thing. After finally getting a proper explanation on how the EBV works, she said to basically leave it for as long as possible {she also said I was put back on the EBV too early after the first major Herxes I had!} With this information, I'm seriously considering cancelling the rest of the Bioresonance appointments I have booked for the rest of the year, I was going back in September but I feel like I need a longer break. We'll see, I have another month before I need to make a final decision.

For now I'm just carrying on as I am, being as sensible as possible & pacing out everything I need & want to do. One thing I have found, once I was able to manage the stairs again, is that I really don't want to be in bed or in my room, which really on some days is the best place for me, I'm putting this down the fact that my mental health is on the up after taking a massive hit. But as my fellow M.E Warriors know, bed is often the best place to be so I'm having to make myself stay there on my worse days to ensure I get the best possible rest.

Copyright Jane (Drozd) Levi

I'm doing this today & so very thankful to past me for recording lots of Bake Off's to watch. It's also helping me to deal with the massive amount of anxiety I'm currently experiencing thanks to the Thunder Storm that's going on while I write this.

So I'm just "looking for Stars" & getting on with it & trying to get back to my normal as best I can. I think that's pretty much it, I don't think there's anything else to say on this matter now & as this storm is getting worse I can't concentrate I need to stop writing & deal with the anxiety.

Take care everyone,

L xxx